Not Fade Away: A Memoir of Senses Lost and Found

by Rebecca Alexander

  “Whatever happened to Jon?” she asked. “You seemed to really like him.” I rolled my eyes at nobody but myself, for not realizing that of course my mom wouldn’t be satisfied with the fact that I was just going out on a date. She wanted me to be “proactive” about my love life and my future. My mother tells me constantly how proud she is of me, and I know that she just wants me to be happy and to have a full life. She wants my future to be secure—and, of course, her own future as the grandmother of my children—and she clearly doesn’t see my disabilities as an impediment to any of this.

  “You have a double master’s from Columbia,” she’ll tell me, “that’s an amazing accomplishment for anyone. Who wouldn’t want to be with you? Your disabilities don’t matter, you’re so beautiful and smart and funny. Anyone who doesn’t want to be with you is crazy.”

  When I arrived at my door, the conversation had wound down, as it generally does if I answer in the noncommittal affirmative on this subject for a while (“Mmmhmm. Uh-huh. Mmm . . .”). All I wanted to do was open the door to my sweet Olive and take my ears out, spending the couple of hours before bed in blissful silence, with all the puppy love I could handle.

  “Well, I love you, Mama,” I told her.

  “I love you, too, sweet girl.”

  “Okay, talk to you soon.”

  “Yep, sounds good. Hey, Becky, you’re thirty-four now, just to be safe you might want to look into freezing your eggs.”

  Really? How did my mom know that at ten P.M. on a Tuesday night, there was nothing I wanted to discuss more than freezing my eggs “just to be safe”? Are you fucking kidding me?

  • • • •

  As a child I never gave much thought to motherhood. I don’t remember thinking about how many kids I’d have or giving much thought to whether I’d have them at all. I know that in New York egg freezing has become commonplace for women in their thirties, but until that moment I hadn’t even considered the possibility, let alone thought about the fact that I might get to a place where I was so desperate to have children that I would consider it.

  The idea of my being a mom probably freaks some people out. It occasionally freaks me out. Or maybe it makes some people sad, because they couldn’t fathom the idea that that’s something I could do. I know that I would be an awesome mom, though. I have a tremendous amount of love and energy and compassion to share, and I love to teach and laugh. I adore kids, and making homemade art projects, and playing those fun hand-clapping games like Miss Suzie and Down by the Banks, and I know every camp song under the sun. I also have incredible role models: my mother, Polly, Caroline’s mother, my amazing grandmas.

  I’m thirty-four, and I want what most people want: A partner who loves me for who I am, unconditionally. I want children, and I want so much to be able to look into their eyes and to hear their first words. I want a home full of love and laughter. I hope that this is something that I can, and will, have. I am not going to settle, to feel as though I’m damaged goods because of my disabilities. We all have our shit—mine being, admittedly, big stuff—but I have to believe that the right person is out there for me, someone who wants and needs me as much as I do him. I believe that there is someone, probably several someones, out there for all of us, we just have to open ourselves up: to following our hearts, taking risks, and knowing that nothing is a guarantee, but that true happiness can’t come without taking chances.

  There are doubts that creep in, though, even as I think about holding a baby in my arms, watching a little kid grow up who inherits my goofy sense of humor or maybe my blue eyes. I know how much a child can learn from having a parent who has a disability, and that it can instill a huge amount of compassion and empathy. I also know, though, that there would be times when he or she would have to make compromises, miss out on things with me, and probably have to learn to do some things on his or her own before other kids. Of course, I would want to teach my children independence and how to handle difficult circumstances, but I would also never, ever want my children to feel the need to take care of me, or be my guide dog, or to ever feel like I couldn’t take care of them. To accept help from other people is hard enough.

  As sure as I am that I would be a good mother, though, and a joyful one, I believe that if I don’t have children, my life will still be rich and full. I have experienced enough uncertainty and loss to know that life is too unpredictable for me to try to guess what’s going to happen in the future. Like a lot of single women out there, I’m looking. I have gone on and off of dating sites. I know a singles-guru matchmaker who takes my spin classes who has convinced me to go to many of her events, including a memorable one on a boat, where I spent the evening tottering around in ridiculous heels, the whole thing loud and dark enough that I couldn’t see or hear much of anything. As scary as it sometimes is, though, I put myself out there. I’m not closing any doors, but I’m not holding my breath, either.

  • • • •

  Finally I got to my door and, as quickly as I could, blurted out, “I’ll think about that, Mom. Love you,” and hung up the phone before she could get another word in. Maybe I would think about it, but right then I knew Olive was wagging her tail furiously on the other side of the door, desperately waiting to jump all over me as I fumbled to get the key into the lock, never an easy task for me. When I got the door open she leapt into my arms, her licking, panting, joyful puppy love an instant balm, and right then she was all the baby that I needed.

  56

  As a psychotherapist, a person living with a disability, someone who has recovered from an eating disorder, and someone who has tendencies toward the neurotic and anxious that seem to be as inherited among Jews as the Ashkenazi disorders that we are plagued by, I have spent a fair amount of time thinking about, reading about, and talking about how to live life now.

  I need to find the time to take care of myself, emotionally and physically. I have always had energy to spare, and I know I can’t calm my brain without working out my body. I need to nurture my relationships, with both friends and family members. I always feel as though I have to take more than my fair share from them, so being there to help and support them in return is hugely important to me. I can’t just be the taker. I need to be working toward a goal, to have my sights set on something. The goal can change, but I always need to be focused on something.

  Maybe it’s just who I am, but, despite all that I have faced, I am happy, and profoundly aware of how fortunate I am. I know that I will do whatever I have to do to protect that happiness and well-being, though it’s not always easy. Just like anything else, it takes work, and part of the work is simply feeling satisfied with life and grateful for what I have, and focusing on those things. I think sometimes that because of, not despite, my disabilities and some of the very difficult things that have happened in my life, like my accident, my eating disorder, and Daniel, I am able to make being fulfilled a priority and have found the things that work for me. I believe that people who live very active lifestyles, despite adversity, accept that there is going to be sadness but don’t let it take over their lives.

  I know that I need to be happy now, and, though it’s not easy, I can honestly say that I work to create that happiness every day. Of course I’m going to be sad or depressed sometimes, and I’m going to think about how much I’m losing, and have already lost, and need to let myself feel that pain.

  After I’m done being sad, though, I’ll remember that there are as many wonderful things that I’ll get to keep: Olive knocking me over and licking my face in her joyful enthusiasm at seeing me, whether it’s been five minutes or five hours; my best friend signing secrets into my palm; the strength of my body; the undying love of my family and friends; my sense of humor; and the ability to help others appreciate what they have.

  I try to remember to be in the moment, whatever that is. When I’m taking a bite of food, snuggling with Olive, pedaling as hard as I can on my bike. When someone I love
hugs me, I can melt into it and accept it fully for the love that it is.

  I appreciate the passing of time. Spring, with its crisp newness, the city feeling cleansed from all the rain. I can smell the sweet, slightly bitter smell of hyacinth wafting from the bodegas and see the flashes of yellow daffodils and purple crocuses as they make their way up from the earth. Fall, with its sense of excitement and longing and nostalgia. Something about the angle of the sun and the way it hits always feels familiar, as though it is tired from the summer and has a softer, lazier feel, not so determined to roast you alive. Metal is no longer hot to the touch, and the loud, irritating hum of air conditioners finally stops. The beginning of fall smells heavier, as the leaves start to bend and color. Time is passing, a year is starting to move toward its close, and I am aware of it, and trying to get all I can from each day.

  At the times when my vision is briefly good enough for me to see something that I rarely can, like a star, it feels like a small miracle and can have me smiling for days.

  I do think that, for most of us, it’s a choice. We can learn to accept the ebb and flow of life, that we wake up in a dynamic body every day, one that is also cyclical and ever changing. Some days, mine can feel different from hour to hour. I’ll wake up sometimes thinking, Hey, I can see pretty well, and by nighttime I feel as though I can’t see a thing. My implant will seem to really improve things one day, and the next I’ll be asking, “What?” all day. I have to accept it, because without acceptance I can’t live in the present.

  57

  My disabilities often take turns jockeying for first place in needing attention. For a while my ears were getting most of the attention, as I tried to get used to the implant. As soon as it started to get even the tiniest bit easier, though, I could once again sense that I was experiencing change in my vision.

  It seems to be going through another right now. I’m not noticing the hole shrinking much, but what I can see is getting grainy, especially in dim lighting. When I have patients I want to look directly at them for their whole appointment, I owe them that, but it’s very exhausting to look in one place, and at one thing, for so long. I can’t keep the office as bright as I like, because patients like a quieter, gentler light. I think it can already feel uncomfortable to be spilling out all of your shit to someone; you don’t want to feel like you’re in an interrogation chamber as well. And, as considerate as they are about whatever I’ve told them about my disabilities, this is their time, not mine. Most of the time it’s good for me to totally focus on someone else and to forget everything else in my life. I have the ability to completely shut out everything else and concentrate on them. My eyes, however, have more trouble doing that.

  Sometimes I now see what look like little white slugs circling through my line of vision. I can tell that it’s something that my eyes are projecting, like some strange video game floating in front of me. I hate them. And I hate what they portend. Because what little vision I have had has been clear. Very limited, but clear. The clock is ticking louder now.

  When I get up in the morning it’s not as bad. By the end of the day, though, my eyes are exhausted, and I want the dark as much as I want my precious silence.

  • • • •

  Lately I’ve been thinking about how I’m really a miracle of modern medicine.

  For starters, there’s my bionic ear. My wacky, shrill, but nonetheless extraordinary ear. Not to mention my other ear, whose hearing aids—three of them, all for different environments—help enormously. I wish I could say that either of these was a perfect fix. They aren’t—by a long shot—but they improve my quality of life immensely.

  Then there’s my reconstructed foot and all of the shattered parts in my body that were mended: bones grafted, breaks set, everything pieced back together like a jigsaw puzzle. Were it not for the extraordinary doctors who have devoted their lives to research, to whom I owe an enormous debt of gratitude, I would be almost entirely deaf, mostly blind, and wheelchair-bound.

  Then there are my eyes. The big kahuna. I just took my first vision test in more than two years. I was back in California, and I met with Dr. Jacque Duncan, a wonderful woman who has been my primary ophthalmologist for more than fifteen years. Although I had lost more vision, it wasn’t any more than what was expected. In fact, when I read the notes that my mother had carefully taken, I saw that in some ways, it had deteriorated less than they thought it would. Still, though, when I got to the end, it read, as it always has, There is still no treatment or cure for Rebecca’s vision loss.

  Even as a skeptic, I can recognize that there might be promise on the horizon. So many people are working toward a cure, using cutting-edge research and methods to try to give me my eyes back, to help so many of us out there. I have to admit that not only am I terrible at science, but I am afraid to get too involved with it all, afraid to spend all of my time hoping, though I am, of course, aware of it. Alan and my parents are wonderful this way; they give me every update, meet with every doctor and researcher, and hunt down every lead. That is something that I would not be able to do myself. Getting through the day is exhausting for me. Although my life is often wonderful and fulfilling, it takes every last drop of energy I have just to get where I need to go, see my patients, teach my classes, spend time with Olive and my friends, and maybe even go on a date. Most of us are probably wiped out after a day in this city that never stops moving, but, since just navigating the sidewalk is a new adventure for me every day, if I didn’t give it my all, I couldn’t do it. I wouldn’t get out of bed. I don’t have the time to hunt down the leads and throw myself into the research and still get done all of the things I want to accomplish in my life.

  The work that is currently being done on restoring vision is fascinating, though. Stem cell research, gene therapy, and prosthetics have all shown promise, and some people have even gotten limited vision back with them. Dr. Shinya Yamanaka, who won a Nobel Prize in medicine in 2012, is leading one of the first-ever clinical trials using stem cells from a person’s own body. MacArthur “Genius Grant” winner Sheila Nirenberg, an extraordinary woman, is working on a gene therapy called optogenetics, which holds great promise for all kinds of retinal diseases. And there are many, many more.

  People have encouraged me to get involved in studies before, but doing one can render you unable to do others, and so I’m waiting. Waiting for advancements that will come eventually, soon enough, I hope, to help me, but I refuse to hold my breath. I have to live where I am and to be grateful for the sight that I have. For me there is no other way to live.

  58

  Last weekend, I went home for my aunt Ellen and aunt Lourdes’s wedding. They have been together for thirty-three years and were finally tying the knot now that gay marriage was legal in California. Peter and Alison were there, with beautiful baby Ava. She’d grown so much already, her face had changed, and I longed so much to be able to watch her grow into a little girl, to watch her body lengthen, to see that gorgeous smile on her as a teenager and at her wedding.

  Grandma Faye was there, still rocking it at ninety-six, about to embark on her trip to Asia. My father, Polly, Lauren, and Daniel were all there, too. Daniel and I shared a room, and he told me about his plans for the future. He wants to buy a van and live without any help from my parents. At this point, all I want is for my sweet Danny to be happy. I’ll always hope for that.

  During the reception there was a deejay, and Lauren and I started dancing. Peter got up to join us, with his goofy flair, singing along loudly. Then Alison, who is now like a sister to me, too beautiful to look silly dancing even if she tried. My dad joined in next, doing his usual twist. Daniel got in there, too, still the best dancer, despite everything. The music was so loud that I could really hear it, and it drowned out every other noise. They were familiar, cheesy wedding songs, “Celebration” and “Holiday,” songs whose words were forever seared into my brain, so I didn’t have to hear them clearly to sing along. I
closed my eyes and let myself be fully in the moment, dancing with some of the people I love most in the world. I knew that even when I couldn’t see anything anymore, I would be full of joy doing this: dancing, in the dark, surrounded by all the love that I could ever hope for.

  I knew, too, that when I flew back to New York, exhausted, Caroline would be there, taking care of Olive, both of them waiting for me to return. I’d ask her to sleep over, and it would be such a relief, after a crazy weekend of family and travel, to finally turn my implant off, take out my hearing aid, and turn out the light. Then we’d lie next to one another, and I’d take her hands and tell her about my weekend, signing my stories into her palms.

  Acknowledgments

  My list of acknowledgments could span the length of this entire book so please bear with me.

  Thank you to the Gotham Books team at Penguin for your teamwork, editing, guidance, and feedback throughout this entire process. Jessica Sindler, Bill Shinker, and Lisa Johnson for your interest and belief in the power of this book. Lauren Marino for taking the reins, editing, and encouraging us to make it the best it could be. Emily Wunderlich, many thanks for your availability and feedback. Thank you to my publicist, Lindsay Gordon, for introducing and promoting this book to everything public and media related and for taking the time to get to know me personally. Thank you, Laura Rossi, for having the same rockin’ energy as I do and for helping me overcome my fears of social media—or better yet, handling it for me.